Missouri Advocates For Families Affected by Autism

We are a citizens action group advocating and lobbying for families that have a child with special needs. We believe that EVERY child has a right to a FREE and APPROPRIATE EDUCATION and should NEVER BE LEFT BEHIND.

In fact, only three states, plus the District of Columbia, actually hit or exceeded Duncan's estimate on failure to make AYP: the District, at 87 percent; Florida; at 89 percent; Missouri, at 88 percent; and New Mexico, at 87 percent.

The children and adult characters in this book are based on students and individuals that the author has interacted with and/or worked with directly.The majority of children who “speak” in this book are non-verbal. Their words which you will read are fictitious and were never spoken by them but are based on actual events that occurred in their lives. It is the author’s belief that if the non-verbal children in this book could speak, what you are about to read is what they might have said.Any conversations between the author and anyone in the book are based on actual events and conversations.“Never, never be afraid to do what’s right, especially if the well-being of a person or animal is at stake. Society’s punishments are small compared to the wounds we inflict on our soul when we look the other way.” ~ Dr. Martin Luther King, Jr.

Sunday, November 27, 2011

I have been witness to and heard stories of school employees that emotionally, psychologically, and verbally abuse children. This should be included in these laws. Bullying is bullying. Zero tolerance should apply to everyone in a school building. Not just the children.

Some states fare particularly poorly, Easter Seals found. Alabama, Arkansas, Georgia, the District of Columbia, Mississippi, Missouri, Montana, and Tennessee serve fewer than 2 percent of their population. On the other hand, some states do much better: Massachusetts, New Mexico, New Hampshire, New York, Rhode Island, and Wyoming serve more than 4 percent of their population through Part C.

Profiles in courage- stories of living with autism

Jessica Simmers lives it every day. You might have seen Jessica and her blonde hair, angelic-face little boy on the front page of the Southeast Missourian this week.

Let me take you back.

Landyn, did everything early. Jessica said as soon as he started crawling he wanted to walk.

And then everything stopped. Landyn turned 2 and he stopped talking. He grew extremely distant from other children, almost like he was ignoring them. He was obsessed with routine. He had to eat breakfast as soon as he woke up. He wanted to go outside, no matter the weather, or he would become agitated, cry inconsolably.

About seven months ago, Jessica's finance saw a program about autism and noticed startling similarities in Landyn. They did their research, mostly online. Of the 15 basic symptoms of autism spectrum disorder, Landyn exhibited 14.

Jessica took her son to the Southeast Missouri State University Autism Center for Diagnosis and Treatment in January. The diagnosis came down fast, and it was just what this young mother suspected: autism.

"I was upset but relieved," she told me. "I knew what it was, and I knew how to help him."

Help is on the way. It appears Landyn, 3, Jessica's "blessing, is getting the care he needs through a suite of services at the center and beyond. And the earlier treatment the better, reams of studies on autism and plenty of experience teach us.

Dr. David Crowe, of Cape Girardeau, has felt the heartbreak that autism brings.

His son, Taylor, was a happy, joyful toddler, advanced in speech and development before he shut down. He lost virtually all of his language skills by the time he was 3 1/2.

Here's the part that really hits me where I live as a dad, and as a son of a father whose ability to speak was robbed by stroke.

"One morning we were having breakfast, and Taylor said, 'Daddy, my mouth won't say the words, my mouth won't say the words,' and he started crying," Crowe said. "He was letting us know that's what was happening; we just didn't know what he was saying. Then it was gone."

Taylor couldn't stand being touched, he was impatient, he couldn't communicate and he was frustrated. He cried all the time.

"It's very difficult to put into words what it's like to have your child essentially change overnight, becoming distant, uncomfortable and unhappy after he had been a happy, joyful little child," Crowe said.

Taylor experienced what appears to be Landyn's diagnosis: Childhood disintegrative disorder. The average age of onset is between three and four years of age, although symptoms may appear by 2. Until this time, the child has age-appropriate skills in communication and social relationships.

To watch your child grow, to learn, to experience the joys of toddlerhood and then watch so much of it virtually taken away overnight is frightening beyond comprehension to me.

But the Crowe family, especially Taylor, never gave up.

Through meticulous speech therapy work, deep social connections, patience and love, Taylor, who turns 30 this year, is an artist and an author who has traveled the country telling his story, explaining autism spectrum disorders. Crowe calls him a "living, breathing example of what the human potential could do." Taylor, he said, is his hero.

"We always felt that happy little boy was locked in there, and we just wanted him back," he said.

There are an estimated as many as 700,000 children and young adults are living with autism spectrum disorder. Some cases are more severe than others, some stories don't have the kind of happier endings the Crowes experienced. And with so many autistic children beginning to come of age, experts in the field say a crisis of service and resources, too, is coming.

This is National Autism Awareness Month. It's a time to remember the people affected by this group of neurological disorders and, I believe, the courage they must have to carry themselves through to the other side of fear.

As one parent of an autistic child put it, living with autism is about patience and love.

I think it's also about a kind of strength unknown to most.

All qualities that teach us how to live and learn.

Here are some upcoming Southeast Missouri State University events commemorating National Autism Awareness Month

* The Alpha Xi Delta sorority at Southeast Missouri State University is hosting its annual Walk Now for Autism Speaks and Alpha Xi Delta BBQ on Sunday. The walk, which takes place at Capaha Park in Cape Girardeau, is open to the public. Registration begins at 8:30 a.m., with the walk starting at 9:30 a.m. A BBQ will be held after the completion of the walk at 11:30 a.m.

* The Southeast Autism Center for Diagnosis and Treatment along with Counseling and Disability Services is co-sponsoring a movie night, showing "Temple Grandin" at 6 p.m. April 18 in the University Center Program Lounge. The award-winning HBO movie, starring Clare Danes, is a story of an Autistic woman who has become one of the top scientists in the humane livestock-handling industry and is a widely-respected presenter and author in the field of Autism.

* The International Counseling Honor Society, Chi Sigma Iota, at Southeast will host a meeting on April 19 to focus on interventions and treatment for working with individuals diagnosed with an Autism Spectrum Disorder. Moore and Hébert will be the presenters for the evening.

*Autism and developmental screenings will be available on Friday, April 29, in Dexter, Mo. The screenings are co-sponsored by the S.H.O.W. Mobile (Southeast Health on Wheels) at Southeast and the University Autism Center. Families who have concerns regarding child development are encouraged to come to the S.H.O.W. Mobile for screenings. The S.H.O.W. Mobile operates out of the College of Health and Human Services in a partnership with Southeast Health. Once time, location and procedures for obtaining an appointment are finalized, information will be available on the University Autism Center website at www.semo.edu/autismcenter or by calling (573) 986-4985.

Despite significant public expenditures in special education, students with intellectual and developmental disabilities frequently transition out of high school lacking the proper skills required to find and maintain employment or pursue post-secondary education. This trend is due to a reluctance among state and local educational authorities in providing hands-on work experience and training (including mentoring, internships, summer work programs, and career development) that is typically offered to non-disabled students during their transitional years. Instead, low expectations dominate individualized education plans (IEPs) for students with special needs despite the potential and desire of many students to pursue opportunities that will help them gain experience to better prepare them for the workforce and adulthood. Although the Individuals with Disabilities in Education Act (IDEA) requires schools to provide transition services to support students with disabilities during their high school years, there currently lacks no enforcement, monitoring or evaluation of school districts to ensure that they are complying with this important provision in the law.

It is no surprise then that upon exiting the school system, these young citizens are woefully unprepared and unsupported in finding and maintaining employment in the community and at wages which promote optimal self-sufficiency and independence. Yet research demonstrates that when provided with preparatory, hands-on job experience in the form of part-time work, internships, or summer employment, individuals with significant disabilities can successfully obtain and sustain work in integrated settings and earn competitive wages.

PURPOSE OF LEGISLATION

The TEAM legislation provides three separate legislative responses to better align existing federal programs providing publically-funded systems and supports to focus on one uniform goal – ensuring that every youth with a significant disability has the opportunity, encouragement and support to become gainfully employed in an integrated setting, pursue a post-secondary education, and contribute to and meaningfully engage in typical community settings upon leaving high school.

TEAM-EDUCATION ACT OF 2011: BILL SUMMARY

The TEAM-Education Act amends IDEA to encourage and empower schools districts, states educational authorities, students with significant disabilities, their familiesand transition teams to plan for and achieve employment in an integrated setting at minimum wage or higher after high school.

 Adds requirements to ensure Individualized Education Plans (IEPs) holistically address the transition needs of students: Under this bill, the IEP changes the age when transition planning must be included in a student’s IEP from age 14 to 16, and requires school districts to invite the State Intellectual/Developmental Disability (I/DD) Authority to participate on the IEP & transition planning team for students expected to be eligible for adult I/DD services. The bill further requires the IEP to include comprehensive transition planning and services, including objectives for developing the skills, knowledge-base, training and experience to successfully obtain integrated employment, economic self-sufficiency, independent living and community involvement. The bill would require schools to produce a comprehensive portfolio of the student’s skills, experiences and talents relevant to employers, tobe given to the student and parents once the student exits the school system. Additionally, the bill offers

TEAM-Education Act of 2011 Page 2

advocacy training for students and families to help them prepare better for articulating the wishes of the student during the IEP process.

 Allows for IDEA Part B discretionary dollars to be used by school districts to hire or contract with professionals possessing transition expertise for youth with significant disabilities: The legislation clarifies that school districts are allowed and encouraged to use IDEA discretionary funds for either hiring transition experts within or contracting out transition services as needed, based on stringent criteria that these contracts be focused on the preparation and confirmation of integrated, competitive employment or other desired post-secondary education outcomes.

 Modifies the Definition of Transition Services: Ensures that the definition of transition services includes customized employment services and training in advocacy and self-determination activities to better prepare youth for job preparation and advocating on their own behalf. Additionally, the bill clarifies that transition services do not include facility-based or other segregated programs.

 Establishes Support for Local Transition Coordinators: Provides $50 million to Local Educational Agencies (LEAs) to pilot the hiring of internal transition services coordinators who would be responsible for facilitating relationships with public and private entities on behalf of the student and the student’s family to ensure the successful provision of desired transition services necessary to achieving the student’s transition objectives.

POLICY RATIONALE

The goal of publically-funded transition services and supports for youth with disabilities should be focused on helping youth with significant disabilities acquire the skills, knowledge and experience required to successfully obtain a job in an integrated setting at minimum wage or higher, ensure maximum community participation and achieve optimal self-sufficiency. To achieve this goal, Congress must establish a coordinated, comprehensive approach to the investment of public resources that expands and improves the choices of youth with significant disabilities who are transitioning into adulthood to ensure the design and execution of an individualized , coordinated strategy aimed at securing meaningful post-secondary educational opportunities, career development and training, supported employment in an integrated setting, and inclusion in the community setting through independent living and social engagement.

The TEAM-Education Act would streamline the transition process at the high-school level and require coordination and collaboration between the state education authority and the State I/DD authority to maximize the efficient use of resources through systems alignment. Clarifying that facility based or other segregated experiences are not acceptable transition services will focus IEP teams on having high expectations of all students and in identifying opportunities that lead to integrated employment, post secondary education, independent living and optimal self-sufficiency for students with significant disabilities. The legislation ensures that the newest and most promising practices for assisting students in finding, creating and maintaining employment are implemented, rather than promoting a continued dismissal of the potential of students with disabilities to become productive citizens and contribute in meaningful ways to their communities.

ACTION REQUIRED

Congressional leaders dedicated to improving the future opportunities of youth with significant disabilities through fiscally responsible, innovative systems-reform strategies are encouraged to co-sponsor all three of the following legislative proposals: TEAM-Education Act of 2011; Team-Empowerment Act of 2011; and TEAM-Employment Act of 2011. To cosponsor one or more of these innovative legislative bills, please contact Scot Malvaney in the Office of U.S. Representative Gregg Harper (R-MS) at scot.malvaney@mail.house.gov or 202-225-5031.